May is Ehlers-Danlos Awareness Month – Learn More About EDS

May 15, 2023

Lara Bloom, President and CEO of The Ehlers-Danlos Society, talks about why learning about Ehlers-Danlos Syndrome is important, the challenges associated with living with the condition, and the health disparities that exist with EDS.

According to the Ehlers-Danlos Society website, Ehlers-Danlos syndromes (EDS) are a group of 13 heritable connective tissue disorders. The conditions are caused by genetic changes that affect connective tissue. Each type of EDS has its own set of features with distinct diagnostic criteria. Some features are seen across all types of EDS, including joint hypermobility, skin hyperextensibility, and tissue fragility. 

Currently, there are 13 types of EDS, each with its own genetic cause. Many with EDS are also diagnosed with other conditions such as dysautonomia and mast cell diseases. While there is no specific treatment for EDS, the individual symptoms can be managed, so someone with EDS could see a number of different specialists. Because symptoms for someone with EDS can vary so widely, each person will respond differently to different therapies. A care coordinator may help in determining the best course of action for treatment.

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